Not every doctor sees Down syndrome as a treatable condition. Many will dismiss symptoms that would be alarming in a typical child because it's "just part of the Down syndrome".
Thankfully there are some doctors who realize that Down syndrome is treatable. We are lucky enough to have our son Benny in the care of one such doctor, the wonderful Dr. Erica Peirson.
Since working with her to correct Benny's hypothyroidism we have seen him go from an infant with incredibly low muscle tone, near constant tongue thrusting and poor health to a strong little boy whose trisomy 21 isn't having such a huge impact on him anymore.
Despite these obvious signs of congenital hypothyroidism as a newborn, Benny would still not have been diagnosed to this day if it weren't for Dr. Peirson.
All of his other doctors would only look at his TSH and T4 levels, which were only slightly off. Dr Peirson looked at all of Benny's thyroid levels and discovered that his reverse T3 was off the charts. This meant that Benny wasn't absorbing the T3 into his cells. He was suffering from hypothyroidism just as much as if his T4 or TSH were high.
I am so grateful that we discovered this fairly early on. My only wish is that we had found out even earlier. Untreated congenital hypothyroidism causes irreversible brain damage, and the longer you wait to treat it the worse it is.
Unfortunately, many babies born with Down syndrome will suffer this avoidable brain damage because so many medical professionals will dismiss their obvious hypothyroid issues as being caused by their extra chromosome and fail to run all of the labwork necessary to identify and treat the issue.
After witnessing the incredible transformation in my son and realizing how many babies born with Down syndrome are not benefiting from this information, I asked Dr Peirson if she would talk to me about these thyroid specific issues related to Down syndrome on our T21 Action podcast.
The result is this truly amazing interview that I am so very proud of. I hope that you will listen to and share this podcast with anyone you think might benefit.
Since becoming a mom to a little boy with Trisomy 21 I have written a lot about Down syndrome and disabilities. I am a storyteller, wife and mom to a teen and a toddler. Life is busy!